Hey, everyone. 29 year old here who has been dealing with this throughout 2022. I'm at a point right now where I feel completely defeated and have no idea what to do. Back in January of this year, I remember feeling a painful "twitch" or something while masturbating. I thought nothing of it at the time, but later in March found my penis to be curving somewhat, which really bothered me. I didn't do much for it until finally purchasing a Restorex this past August, along with starting to take CO Q10, Acetyl L-Carnitine, and L-arginine. At the time I started using the Restorex, I had maybe a 20 degree upward curvature and a very tiny indentation.
While it seems like my curvature has somewhat improved, my indentation has progressed into full hourglassing and only gotten worse and worse. I am at a total loss of what to do here. I've spent the past two days combing through threads, going down the rabbit holes of "hard flaccid syndrome" or the young male patients described by Dr. Trost as not actually having Peyronie's. I'm paralyzed and unsure if I should continue using the Restorex or not. I don't want to further agitate things and make hourglassing worse, but I also don't want to risk further progression by doing nothing. I feel so overwhelmed and hopeless right now, and I don't know what direction to turn in.
I guess my next step is to see if I can get a referral to a urologist from my primary care physician, but in the meantime I don't know what to do with the Restorex, whether to continue using it or not. I guess I'd like to get a third person perspective and maybe some advice to calm myself down and not go crazy over this, because my head is a complete whirlwind right now.
Every urologist have a different opinion on what to do: most of them don't know anything, some of them think that traction helps others don't, some think VED helps others don't, some will recommend Shockwave or PRP while others are against it, unfortunately no one knows how to get rid of penis fibrosis.
Depending on where you live, there are not many urologists who can effectively treat Peyronies Disease.
Also, not all of these specialists require a referral. Some of them will take new patients and your insurance. I live in the Midwest and highly recommend Dr. Levine in Chicago.
I advise you to talk about it with friends or family, someone you really trust and wouldn't make you feel uncomfortable
there is no easy way out, we all have to get used to our new reality and hopefully learn to embrace what life has thrown at us
my advise is to be careful with traction and ved because they may indeed cause harm to your penis. hard to say when it is too much but i hurt myself with ved in the past
im sending you love, i can empathise with your situation.
i had this disease in 2020 and with 2 years of having it i have become less repulsed by the thought of my penis being bent and non completely functional
i still have many crises where i want to die but usually i can find reasons to navigate through life without pain and grief
i hope you will cure your peyronie's, and if not, i hope you will find your balance, your "way" in this world
@20yo
Well written post.
I wish you also will get better.
We need more encouraging well spirited posts like the one you made to the OP.
thank you sonic for your kind words.
hit me up in private message if you want to talk
i agree that we need encouraging posts. i often used to open this side of the forum and regularly would see very grim posts about despair and hopelessnes that would make me feel worse about my own situation. i have used the forum to vent too.
but we also need to bring some hope in the picture, maybe
20yo and Sonic always positive posts lately.
Def talk to someone you know. I kept this inside for the first few months then finally let it out to my friend I've know since second grade. He's been awesome, always checks in and asks a ton of questions. I mean why not, he has a penis too he needs to worry about. I stumbled on this forum by accident and it saved me in more ways than one. It made my decision to say NO to shockwave that my second opinion uro suggested.
We shoulda been taught this disease at a younger age. They teach us to use protection to prevent STDs, why not tell us be careful masturbating? It can cause damage. Anyway that's probably a topic for another thread.
Be safe and positive guys.
Quote from: FrankPD on November 07, 2022, 11:25:55 PM
We shoulda been taught this disease at a younger age. They teach us to use protection to prevent STDs, why not tell us be careful masturbating? It can cause damage. Anyway that's probably a topic for another thread.
100% agree about that Frank. I had no idea this disease even existed and thought for years the only way a man could seriously injure the penis was by fractures. When I found Peyronies through the internet I really couldn't believe what I was reading. Had more men been aware I am certain they would have been more careful.
I agree
in fact when i told my brother that i injured myself with VED, he told me not to worry because he injured his penis too while having sex, but that basically nothing happened he had an ematoma but then everything solved on its own.
What im trying to say is that people don't know how fragile the penis is
Also, certainly some people are more prone to develop Peyronies Disease and some are not
Quote from: 20yo on November 08, 2022, 12:16:17 PM
Also, certainly some people are more prone to develop Peyronies Disease and some are not
I think it's 100% genetic. Somewhere in our genetical tree we have inherited this messed up trait of healing disorder. One of my closest friends ever had hardcore porn like sex for many years and not once did anything happen to his dick whereas some other unfortunate guy who has peyronies in his genes can end up with a 40 degree curve within 2 weeks after just a minor injury.
One of the urologists I went to, a "Peyronies Expert" claimed that it is infact completely hereditary and might also be a sign of an autoimmune disease breaking out in the future...
Not fun to hear that you know, being as my father has both diabetes + heart disease and my mother had MS....
I asked my father if he has Peyronies Disease because I read about it can be genetic. He said no and he don't recall anyone in the family ever saying they have this. The convo came up because we need to see bent carrot commercials so often now.
I stay positive, keep yourself busy.
Be well and safe.
Appreciate the positive and encouraging replies.